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Understanding the impact of knowledge of genetic risk has been a key area of study for some time. This is not a singular impact because it includes clinical outcomes, patient behaviors, provider behaviors, and psychological impact for the patient and family. The sequelae and range of behaviors and outcomes can vary substantially, impacted in turn by multiple personal characteristics and health provider and system factors, creating a complex network of influences. For many of the common, complex diseases for which the genetic underpinnings are being revealed and tests developed, clinical outcomes will greatly be determined by patient behaviors. In turn, patient adoption of healthy behaviors will be affected by several factors, notably their understanding of the disease, their perceived risk, and knowledge of options available to reduce risk. Patient understanding will, thus, be impacted by their interest and ability to find informational resources to improve their understanding. Although genetics maintains a steady presence in the media and pop culture, it is likely that many patients remain unfamiliar about the complexities of genetic testing and clinical significance of genetic risk, triggering a quest for information.1
See Article by Brown et al
In this issue of Circulation: Cardiovascular Genetics, Brown et al2 present their work on information sharing and seeking behaviors following receipt of risk for coronary heart disease (CHD) as part of the MI-GENES study (Myocardial Infarction Genes). In the MI-GENES study, participants were randomized to receive a conventional risk score (CRS) or CRS plus a genetic risk score.3 At the conclusion of the study, participants in the CRS arm were offered the opportunity to learn of their genetic risk. They report that about a third of participants sought information online about CHD and genetic risk factors, with no significant difference between the conventional risk and the …